Category Archives: chronic fatigue

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bravely venturing out on oxygen

So I did go do three whole small errands, one of which was lunch, on the oxygen.

Being on oxygen at home is rather like being married to an octopus. It follows me everywhere, gets caught on stuff and wants me to pay attention. When I go upstairs I have to detach tubing and attach an additional segment. Plus it can tangle. Right now I don’t have it over my ears because they get sore. I found two grabby hair clips and my oxygen tubing is clipped into twisted braids.

It’s also like being one of those really long dinosaurs. You have to pay attention to the tail. I have three floors, so I need a third set of the tubing for the basement. Currently I am just not going there.

I felt so good after the first night on oxygen, that I wore bright colors. Happy colors.

Though I am not normal on oxygen. I have this octopus/tail thing and I still can’t lift much more than the little oxygen tank and my purse and I still can’t go faster than stupidly slow up stairs without my chest hurting. However, before my chest was hurting any time I sat or stood up. Now it only hurts if I push my limits. Me, push limits? How could ANYONE ever think I would do that….

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mystery

I am feeling MUCH better on oxygen. Guess I have needed it for the last 5 weeks. It made me goofy to be hypoxic. It is nice to be able to THINK again. I wish that I had figured it out sooner. Presumably the ER doctor was not hypoxic, so I wonder why he didn’t test me. I told him my heart rate would jump to 124 when I got up and walked but he must have thought…. I have no idea. Now that I can think again, I think he should have walked me and tested my oxygen level.

Well, hopefully I have not lost too many brain cells. It’s nice to be able to find words again. They are not missing any more. Firing on all cylinders.

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Tired

Yes, so the picture is me during Family Practice residency at OHSU. Also a friend, visiting, a fellow graduate from Medical College of Virginia. She looks alive. This pneumonia is making me feel like that picture. I started internship and residency with a six month old. We would wait until 9 pm for his bedtime or sometimes he wouldn’t see me.

One night I was trying to give him a bath, after a day and a night and most of another day on the obstetrics rotation. I had to call my husband to come help, because I could not stay awake by the bathtub. Safety first.

When I had a really bad call night and then ran around the next day trying to get everything done so I could GO HOME, I could not stay awake until my son’s bedtime. So he would put me to bed. By age two he would tuck me in and babble a story and dad would turn out the light…..

I would come home from the day and a half working, just exhausted and my son would be doing something new. “When did he learn to CRAWL!!?!” I would say.

“Oh, is he crawling?” my husband would say. “I don’t know. Didn’t notice.”

RRRRrrrrrr.

When my son started two word sentences around age two, we would ask him questions. “Where does T live?”

“Pink house.”

“Where does daddy live?”

“Pink house.”

“Where does mommy live?”

“Hospital.”

I went and had a tantrum at my residency director. I was so mad at the faculty. My son thought I lived at the hospital. He was right, too. I was pissed and stomped around like a honey badger, wanting a cobra to fight. The faculty ducked into closets and bathrooms…… I gave them hell.

My kids are doing well in spite of mom living in the hospital. Though they acted out some, as normal kids do. A few years ago I asked my daughter, “Where are the barbies?”

“Hmmm.” she said.

I eyed her. That noncommital noise gets my attention.

She shrugs. “Ok, well. T and his friends and I blew them up with firecrackers. In the driveway. When you weren’t home.”

“Hmmm,” I said.

“We did not blow up the Get Real Girl because we knew that would piss you off.”

“Mmmm-hmmm.” Yes, it would.

So I wonder…. what else were they up to? How did the ceiling tiles get broken in the finished basement? There are various other mysteries…. if the house could talk, it would tell me.

The barbies came up a few days ago. “Didn’t you blow up any action figures? Aka Boy Dolls?”

“No.” said my daughter.

“That’s kind of sexist.” I said.

“Hmmm.” she said. And my son just laughed.




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stealthie in the grass

Stealthie in my yard, two days ago. I like the current crop of grass and weeds.

Music: Simon Lynge Hallelujah: https://www.youtube.com/watch?v=iIHpeaHJJ9s

His website is here: https://simonlyngemusic.com/. Hey Simon, when do we get another local concert? Concert in the grass? Hugs, ya’ll.

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myalgic encephalopathy

Myalgic Encephalomyelitis, actually. I put encephalopathy on the Ragtag Daily Prompt, but …. my brain is still a bit fuxxy. Yeah, tried to type fuzzy. It’s sometimes annoying and sometimes funny. I have a little trouble with my balance, as if my proprioception is not quite working right. I have not fallen, but that is really my dance chops. All those years jitterbug dancing, I recover my balance very well. However, I am staying off of ladders for now.

The antibodies are annoying. The dopamine ones are down a little, which is a relief. I still spent 20 minutes this am organizing CDs into categories. This satisfies both the ADHD and the OCD bugs. I have four categories: women musicians, rock and blues, classical/ethnic and local/folk. Sometimes I don’t know where the hell to put a CD. Southern Culture on the Skids… hmm. Harry Connick jr…. double hmmm. I now have a pile of movie soundtracks and a pile of DUNNO. I have picked up CDs at garage sales when they are a dollar each. Random. Those are in a separate “listen to it and decide” pile. They could end up in the library box outside if I dislike them enough. There seems to be some rap, I don’t have tons of that. Punk, now, it gets filed with the rock except when it’s more Americana…..

I can lower the antibody levels with a hot bath. Tend to wait until I really have to eat, eat, then with the antibodies start poking me I have the hot bath. A sauna would help as would a hot tub. Dang. Where is my hot tub? I hurt a lot more if I eat gluten or get my blood sugar high. Sugar is bad. Rice is pretty ok, though muscles hurt afterwards. I’ve long since trashed my glycogen stores, so my blood sugar will drop back to ketosis within 2 hours instead of taking 2-3 days. Feels terrible while it is happening. I get really cold and achy and just feel like I am dying. Lie down, wrap up in a really warm pile of blankets. I feel the shift: lights get brighter, sound gets louder and the pain switches off. Then I get too hot and throw off the blankets and have some energy again. I still have to behave: any little thing like starting to trot up the stairs and OW, my chest starts hurting and I get short of breath. I am a little short of breath just being vertical. I am glad I am not bad enough to have to just lie in bed, that would fungking suck.

Hope you are well. Get the covid vaccine: it may well make you feel rotten, but covid 19 does the same thing only more so. I think that if I got covid 19 I would croak.

Ribbit.

Peace be with you.

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cereal mean stupidity

Some people act mean. Not only do they act mean but they are cereally mean. They are mean about cheerios, about count chocula, about granola, about oatmeal.

Not only do they act mean, and cereally mean, but stupidly mean.

They are stupidly mean because they heard that you like cheerios. It doesn’t matter if you actually do or don’t like cheerios. Someone told them that you like cheerios, they think cereal is sinful and you are LABELLED. They have you labelled as liking cheerios and you are a sinner.

And it doesn’t matter what you say or do. You can say “I don’t like cheerios.” Yeah, they don’t believe you. They think that maybe YOU EAT CHEERIOS when no one is looking, behind curtains, in the basement. They did a search on the internet and you bought Cheerios in 1997. You are a sinner.

You can show photos of your breakfast. “Look! Yohgurt and raspberries!” Doesn’t matter. They whisper, she eats cheerios in secret. You are still a sinner and you are a sinner and a liar.

You can be an upright citizen for years, join the Rotary, volunteer, donate money. Doesn’t matter. The whispers circle back to you: cereal.

So finally you figure it out: fungk them. You do not have time in your life for cereal mean stupidity. You put those people on ignore and leave them there. You cheerfully help if they have a flat tire or appendicitis. You commiserate when they complain that they are miserable. Well, actually, fungk that. Your goal if they call is: get off the phone. “I got a pan burning on the stove, I gotta go to the bathroom, I gotta trim my nosehairs…” Anything but talk to one of them. Because your life is a lot of fun, once you stop trying to change their minds.

And it doesn’t have to be cereal. It can be bipolar disorder or race or politics or the country you are from. Cereal mean stupidity is rather rampant. We have the choice to ignore it and live with more joy than ever.

Peace out.

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Pandas and the toughest yarn

After my sister died, I eventually got a box from her home.

People were cleaning it out. My cousin Ko, my friend Caroline, other friends.

Among other things, they sent part of her yarn stash.

What they sent me was the very very fine yarn and the fuzzy yarn. The mohair.

Oh gosh, I thought, they sent me the toughest yarn.

Well, as part of the dealing with the ADHD/OCD antibody annoyance, which makes me wired while the OTHER antibodies make me physically not able to do much, what am I doing?

Sorting my yarn stash, for one. I have a LOT of that lovely fuzzy soft superfine mohair and other superfine yarns. It is tricky to work with because the fine needles are hard on the hands and because if you screw up, it’s hard to take it out. I know some of the tricks: freezing the sweater is one. It makes it easier for the fibers to untangle.

I’ve also been sorting the knitting books and magazines. I have more books. My mother gave me a whole hardcover book on edges and casting on. I’ve used it twice so far. But now I am home, buzzing with antibodies (yeah, sometimes it feels like ants or bees or pins. On the inside.) and so: knit.

And lo, I find this book. Fine knitting. It even has a mohair t-shirt pattern! Awesome, I am going to be knitting up some of my sister’s mohair. Wonderful. I think she’d approve. Also, I plan to be just as glam and sultry as the woman on the cover, heh.

I think I’ll submit this to the Ragtag Daily Prompt: Country Comfort.